Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

7,779 members • 6,751 posts

All posts for July 2013

Lupus Information Day

Vasculitis UK are delighted to have been invited along to a Lupus Information Day to be held by the East Anglian branch of Lupus UK on Saturday the 12th of...

Vasculitis UK are delighted to have been invited along to a Lupus Information D...

RichardE

Volunteer•11 years ago

2 Replies

My partner is continuously losing weight while on hospital dialysis with good pastures. Is this normal ?

babyface67

•11 years ago

8 Replies

If you live in Wales we need your help as soon as possible please

If you live in Wales and you have experienced problems in getting a referral for your Vasculitis problems or with getting a cross-border referral, or you know...

If you live in Wales and you have experienced problems in getting a referral for...

Suzym2u

Moderator•11 years ago

3 Replies

Want to take advantage of all our features? Just log in!

A new Poll on "other" conditions directly caused by/related to/exacerbated by Vasculitis?

Could we have a poll on this please? I, for one, would be interested in finding out what everyone else has to contend with and seeing exactly how many manage...

Could we have a poll on this please? I, for one, would be interested in finding...

HiveMind

•11 years ago

3 Replies

Can you please advise on low phosphate & low blood pressure

Pre Ritiximab my phosphate was 1.59 & my blood pressure was 85/51, 81/63 & 90/54 too low 2 start iv) then 123/64 (ok 2 start iv). My BP went up & down during...

Pre Ritiximab my phosphate was 1.59 & my blood pressure was 85/51, 81/63 & 90/54...

Alison-cov

•11 years ago

3 Replies

I have had a problem with swollen feet for several weeks now for which I am taking furosemide, this keeps it under control

to a certain extent. I have noticed that I have decreased sensation below knees in both legs, I feel as though I am wearing knee high socks. I also suffer from...

to a certain extent. I have noticed that I have decreased sensation below knees ...

valwood

•11 years ago

4 Replies

Vasculitis specialists in Scotland?

Hi, Does anyone know of a good Vasculitis specialist in Scotland or at least a good hospital that is aware of Vasculitis? Eastern Scotland to be precise. We...

Hi, Does anyone know of a good Vasculitis specialist in Scotland or at least a ...

HiveMind

•11 years ago

3 Replies

Chronic kidney failure

Hi, I would like to know if anybody has experienced a sharp decline in kidney failure, say 5% within 2 months and have to undergo RECORMON injections due to...

Hi, I would like to know if anybody has experienced a sharp decline in kidney f...

cricket0710

•11 years ago

7 Replies

Atos Suffers Two Major Body Blows

This is from the latest Benefits and Works website Atos have been left reeling after two severe blows to their survival as providers of medical assessments...

This is from the latest Benefits and Works website Atos have been left reeling...

Sima1952

•11 years ago

1 Reply

Cervical Spine Spondylosis anyone?

Just been diagnosed with the above (just to add to the list of things wrong with me). I understand, from Googling it, that it is a form of arthritis of the...

Just been diagnosed with the above (just to add to the list of things wrong with...

HiveMind

•11 years ago

4 Replies

WG and painful feet.

Diagnosed with WG in feb 2007,i am 45. Given Rituximab in jan 2013 and have been reducing my steroids down since then until finally finishing pred use approx 3...

Diagnosed with WG in feb 2007,i am 45. Given Rituximab in jan 2013 and have been...

Wilba

•11 years ago

10 Replies

More chemotherapy

I met with my neurologist today; news was worse that what I was expecting. Multiple leg nerve deterioration and regression of nerve damage in one arm as well....

I met with my neurologist today; news was worse that what I was expecting. Mult...

Wellsie

•11 years ago

9 Replies

My top lip feels like it does when I've had a filling and the injection is wearing off, any ideas?

At first I thought I had something stuck in my teeth but it's got worse over the past hour and the right hand side of my top lip is slightly swollen and firmer...

At first I thought I had something stuck in my teeth but it's got worse over the...

AllyGY2013

•11 years ago

7 Replies

Three weeks until my next rituximab infusion, and I feel dreadful. Is this the usual pattern?

I had my first two infusions at the end of January and beginning of February. After two or three months I was really appreciating the positive effect and able...

I had my first two infusions at the end of January and beginning of February. Af...

BronteM

•11 years ago

6 Replies

Latest Update on the HU Upgrade

Hi Everyone, Here's some news and a list of the current priorities the HealthUnlocked developers have regarding the recent upgrade : Internet Explorer (8 &...

Hi Everyone, Here's some news and a list of the current priorities the HealthUn...

RichardE

Volunteer•11 years ago

14 Replies

Antibiotics

I have been referred to the Amyloidosis centre at the Royal Free, ( inflammation clinic ) and they have advised me to take Antibiotics to see if this will...

I have been referred to the Amyloidosis centre at the Royal Free, ( inflammation...

jackrussell

•11 years ago

2 Replies

Mark Porter, Inside Health, Radio 4 discussing Giant Cell Arteritis (Temporal Arteritis) earlier this week

12 minutes and 30 seconds into the programme. Dr Raashid Luqmani speaks on this programme discussing Giant Cell Arteritis (Temporal Arteritis )...

12 minutes and 30 seconds into the programme. Dr Raashid Luqmani speaks on this ...

Suzym2u

Moderator•11 years ago

Be the first to reply

West Country Vasculitis Support Group Lunch

Hi The next meeting for the West Country Support group will be for lunch on Sunday 29 September at the Cat and The Fiddle, Clyst St Mary, Exeter. If anyone...

Hi The next meeting for the West Country Support group will be for lunch on Su...

DevonLottie

•11 years ago

Be the first to reply

'Where am I?', 'Which community am I in?', 'What?' The FAQs [this helpful post is copied with permission from another hu site.]

hope it helps, sandra :) "I know you don't think you'll ever be able to navigate the community. But you will. Oh please believe me. I think I might have...

hope it helps, sandra :) "I know you don't think you'll ever be able to navi...

hamble99b

Volunteer•11 years ago

1 Reply

Advice and Help for any type of Vasculitis

If anyone is Struggling with the new format in the HU community and needs immediate help or support please use the VUK helpline or contact on the VUK website...

If anyone is Struggling with the new format in the HU community and needs immedi...

Suzym2u

Moderator•11 years ago

2 Replies

has help & advice about the heat been offered to you by the medical profession ?

on the news it says that help & advice is being offered to the elderly, disabled and those with chronic illness - no-one has contacted me, has anyone been...

on the news it says that help & advice is being offered to the elderly, disabled...

hamble99b

Volunteer•11 years ago

3 Replies

I feel really ill with this heat. Current temp. 31c in the E Anlian region. Any advise ? I feel very sick.

Hidden

•11 years ago

5 Replies

Giant Cell Arteritis on Inside Health - radio 4

GCA has just been given a slot on Radio 4. They talked to two patients and made the point that it can be very hard to diagnose. They also highlighted the fact...

GCA has just been given a slot on Radio 4. They talked to two patients and made ...

BronteM

•11 years ago

4 Replies

HU are sending out emails to explain the prob's and invite people back. Yay!!

hopefully we'll be up & running again in no time. sandra :)

hamble99b

Volunteer•11 years ago

1 Reply

Picked up on Twitter today regarding Organ Donation

http://www.telegraph.co.uk/health/10178785/Im-an-organ-donor-see-my-wristband.html makes interesting reading. Susan

http://www.telegraph.co.uk/health/10178785/Im-an-organ-donor-see-my-wristband.ht...

Suzym2u

Moderator•11 years ago

2 Replies

LONDON (North) VASCULITIS SUPPORT GROUP MEETING THIS SUNDAY

Dave is having problems with his computer and asked me to remind everyone about his Support Group meeting on 21st July. This will be held at the Swiss Cottage...

Dave is having problems with his computer and asked me to remind everyone about ...

PatriciaAnn

•11 years ago

Be the first to reply

My first Meeting of the Clinical Reference Group on Friday in London

Such a great opportunity to improve NHS care for people with Rare Diseases including Vasculitis. The direct specialised commissioning function of NHS England...

Such a great opportunity to improve NHS care for people with Rare Diseases inclu...

John_Mills

Volunteer•11 years ago

1 Reply

Sorry to be pedantic but, in common with most registrations which ask for 'country', What's wrong with England?

The 'United Kingdom' is a collection of countries?

braindamage

•11 years ago

2 Replies

The Castle Howard Triathlon 21st July

Castle Howard has been the home of part of the Howard family for more than 300 years. It is familiar to television and movie audiences as the fictional...

Castle Howard has been the home of part of the Howard family for more than 300 y...

Jann

•11 years ago

Be the first to reply

Do You Access Specialised Services in Wales?

Genetic Alliance UK home Wales We would like to hear about the experiences of patients with rare conditions who have identified difficulties in accessing...

Genetic Alliance UK home Wales We would like to hear about the experiences o...

John_Mills

Volunteer•11 years ago

Be the first to reply

Posts - Vasculitis UK | HealthUnlocked

Vasculitis UK

All posts for July 2013

Lupus Information Day

My partner is continuously losing weight while on hospital dialysis with good pastures. Is this normal ?

If you live in Wales we need your help as soon as possible please

A new Poll on "other" conditions directly caused by/related to/exacerbated by Vasculitis?

Can you please advise on low phosphate & low blood pressure

I have had a problem with swollen feet for several weeks now for which I am taking furosemide, this keeps it under control

Vasculitis specialists in Scotland?

Chronic kidney failure

Atos Suffers Two Major Body Blows

Cervical Spine Spondylosis anyone?

WG and painful feet.

More chemotherapy

My top lip feels like it does when I've had a filling and the injection is wearing off, any ideas?

Three weeks until my next rituximab infusion, and I feel dreadful. Is this the usual pattern?

Latest Update on the HU Upgrade

Antibiotics

Mark Porter, Inside Health, Radio 4 discussing Giant Cell Arteritis (Temporal Arteritis) earlier this week

West Country Vasculitis Support Group Lunch

'Where am I?', 'Which community am I in?', 'What?' The FAQs [this helpful post is copied with permission from another hu site.]

Advice and Help for any type of Vasculitis

has help & advice about the heat been offered to you by the medical profession ?

I feel really ill with this heat. Current temp. 31c in the E Anlian region. Any advise ? I feel very sick.

Giant Cell Arteritis on Inside Health - radio 4

HU are sending out emails to explain the prob's and invite people back. Yay!!

Picked up on Twitter today regarding Organ Donation

LONDON (North) VASCULITIS SUPPORT GROUP MEETING THIS SUNDAY

My first Meeting of the Clinical Reference Group on Friday in London

Sorry to be pedantic but, in common with most registrations which ask for 'country', What's wrong with England?

The Castle Howard Triathlon 21st July

Do You Access Specialised Services in Wales?

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